MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

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Hi Everyone,

 

Just checking to see if anyone is going to the NYC Wings of Hope Gala Next Thurs..  Would love to get together.. Hope to  see some of you there.. 

Love and Light

Carole K

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Hi,Jim here from Ohio.About a year and a half ago,my mom got what I guess could be called a small lump-like thing on her arm.It looked like an infected mole or an infected bite of some sort.It was purple.Her regular doc said it didnt look like cancer to her and prescribed a cream for it.My mom said the cream seemed to help for a while but it ran out.When she called her doc,the doc said to see a dermatologist to be safe.The visit was today.The dermatologist looked and said she couldnt rule anything out.She said it could be an infected lesion,treatable skin cancer or melanoma,as she said some melanomas are purple.She did a biopsy and then removed the rest.We now wait 7-10 days for results and we are all scared.My mom just lost her sister,my aunt,to lymphoma and is certain she now has melanoma.Any advice or info would be greatly appreciated.Please help!!And thanks.

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odonoghue80's picture
Replies 1
Last reply 10/22/2014 - 7:37pm
Replies by: rjr11273

Hi all, have a question: has anybody had chemo? and radiation to a direct tumor in your body? not the brain. 

I have a huge (grapefruit size) tumor in my groin that will not shrink. I've had most of the treatments out there (Ipi, BRAF drugs, and Anti-PD1 Nivolumab). I'm just wondering I can do? I'm not feeling great about radiation and especially the location of this tumor in my groin. Possible side effects of fertility issues, lower testosterone. Not great. 

Again, I'm feeling pretty good right now through two rounds of chemo. It just has now shrink this huge tumor - about  I'm just afraid of what happens next. 

Thanks,

Shane 

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Anonymous's picture
Replies 3
Last reply 10/22/2014 - 3:09pm
Replies by: Anonymous, Ed Williams, Julie in SoCal

Hello

I posted before about my son -27 y/old with stage 3C. He is been seeing at Princess Margaret in Toronto, Canada.

He had a few surgeries to removed compromised lymph nodes, lesion on scalp and SLN. They found one lymph node with melanoma cells each time (2).

He had the 4th infusions of IPI every three weeks which ended end of July. Afterward, they found another lymph node with cancer cells (last surgery was a few weeks ago). He didn't experience too many side effects aside of fatigue and maybe some Gi issues from the med. He wonders if the IPI is working.

He will start the next phase of the trial with the 3 mg/kg every 12 weeks x 4 times. He refused to have radiation on his neck where the lymph nodes were affected and prefers to continue with immunotherapy. 

My question is: Did anyone experience slow response from this med and then becoming effective during the maintanance phase? I think the oncologist is hopeful that the immune system will kick in once he starts the maintanance phase. In the meantime, we are looking for more trials should we need to change directions. 

Thank you for your input!

M

 

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Girl52's picture
Replies 7
Last reply 10/22/2014 - 7:12pm
Replies by: Girl52, Janner, Anonymous, Lil0909, Linny

BIL still has no plans to see an oncologist. And he won't have followup meeting with surgeon who did his SNB and WLE until next week. He said yesterday that docs he has seen so far should be fired for cutting into his perfectly healthy arm and scaring him with dire diagnosis and then finding nothing.

For now, my sister is finished trying to influence her husband's decisions about evaluating and treating the metastatic melanoma he was diagnosed with via pathology report. She says I'm of course free to share with him directly what I've learned. I haven't decided whether or not to do that. 

Nothing has worked so far. And if insanity is doing the same thing over and over (offering info and suggestions) and expecting different results, I've gone around the bend. Having had a first husband who died of a rare and slowly deadly cancer, this is so hard for me. BIL is highly resistant personality, but I thought in a potentially life-threatening situation, he would listen. This is like watching a tornado approach and your dear one refusing to take shelter.

Will try to settle down, hope, and yes pray that he alters his approach. If he's okay with the uncertainty, maybe I need to learn to live with it.

Thanks for responding so thoughtfully to my many questions....with special gratitude to Janner and Linny. You are amazing people. Hope there's something about this thread that does or will help another member. Would be interested to hear whether anyone else has struggled with similar issue and how you handled it, with your loved one or within yourself.

I'll be reading and returning here for my own info and insight now, rather than passing learning on to sis and BIL, unless they ask. Keep up all good work.

 

 

 

Sis-in-law of person just diagnosed with metastatic non-cutaneous melanoma

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Maureen038's picture
Replies 2
Last reply 10/22/2014 - 2:26pm
Replies by: Maureen038, Janner

My husband has had stage four acral litigious melanoma for two years. He is on the ipi/nivolumbab phase one trial and is stable. My concern is my 27 year old son in the last month has had three colorless hard bumps appear (one on an arm, one on the neck and one on the chest). I took him to the dermatologist yesterday and gave the history of my husband. The appointment to remove them is next week and the doctor said it will probably need a few stitches. Since I wasn't in the room during the exam, I'm assuming the doctor is doing punch biopsies on all three bumps. Is this the correct approach?

Maureen

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ashlee12's picture
Replies 14
Last reply 10/22/2014 - 3:43pm
Replies by: Anonymous, Linny, Teochasse, arthurjedi007, Janner

So I have questions about melanoma that I'm not to sure about . How does it spread and how does it get into lymph nodes? Is it a by blood thing?? 

 

Also so I read its a fast spreading cancer... Does that mean it can spread in a week a year ?? 

i currently have stage 0 so I wanna know what can happen

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Jewel's picture
Replies 6
Last reply 10/22/2014 - 12:37pm

Hi there,

   Here is a fast history. 3.7 nodular mole found on husbands left calf 11/2010. Recurrance in 9/2011 on calf, Complete Lymphnode Dissection of left groin 3/19 positive. All clear until 9/2014 Ct scan followed by full body Pet Scan. Showing hot spots in the External iliac nodes & the pop nodes on the knee. Surgery(s) for removal is scheduled for 11/6. Hoping to get back to his NED status. Our oncologist is talking about starting him on YERVOY/IPI. My husband is Braf positive. Catherine from Melanoma Intl tried to look for PD1 trials for us but the closest is 5 hrs away. Ok so here is the question. My husband feels that if he is declared NED after surgery, why put that stuff in his body until HE HAS too. We are way up in the Adirondacks where the nearest hospital is an hour each way. We do have a local health clinic that is open M-F till 4. Is there any Stage 4 people here that have only maintained that way thru surgery? Is my husband crazy?, or am I for wanting him to proceed with YERVOY even though the side effects scare me. Thoughts and experiences PLEASE!

 

Thank you,

Jewel

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Anonymous's picture
Anonymous
Replies 1
Last reply 10/21/2014 - 9:39am
Replies by: Janner

Can blood moles be melanoma? I was first diagnosed in 2003 and have been NED since my WLE. I required no other treatment. 

I have a blood mole that has been there for a few years but is changing. I can't get into derm until Friday. Freaking out a bit.  TIA 

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MattF's picture
Replies 9
Last reply 10/22/2014 - 7:02am

Hey everyone

So I am currently on Xgeva injetins fo my bone mets.  And I just finished Yervoy.

 

Had TAF / MEK Jan - Jun (failed in June and i went downward fast) 

Ipi Aug - Sept 

2 rounds of radiation (brain spots and abdomin) over the summer.

 

Start Keytruda  on Wed 

 

Thinking this is the last treatment

 

pretty darn scared.

Matt

 

 

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Janet Lee's picture
Replies 3
Last reply 10/21/2014 - 2:53pm

It has been months since I've posted something about our roller-coaster ride with melanoma. My Don has had one issue after another since his diagnosis in January of 2013, Stage IV. He finally started on Merck's expanded access to Anti-PD1 in late June, and at this point after five infusions it appears that he is not responding to the treatment. The mets in his lower abdomen appear to be growing and causing even more problems.

It breaks my heart to see this beautiful man suffer so, and to see his robust, healthy 200+ pound body deteriorate to a skeletal 130 pounds. Dr. Hodi at Dana Farber is now saying no more PD1 until he feels stronger. He has been in so much pain for so long, I think it has just sapped too much out of him.

Don has now been in the hospital for one month. He had an epidural catheter placed so that he gets continuous pain medication directly into his spine instead of taking all those pills and being affected by the pain meds mentally. The theory is to get him out of pain so that he can regain some strength to continue treatments.

However, now the catheter is causing him pretty significant discomfort and he is once again in too much pain to move much. And after being bedridden for a month, there's not much strength there at all.

As always, we appreciate any feedback, common experiences, helpful anecdotes.

I started writing an email to our friends and relatives right after Don was diagnosed, more so I knew I what I said to whom. I later started posting on one of those "caring" websites. It occurred to me that some of you may be interested these updates, so I'll give you the link here:

https://www.mylifeline.org/donlee

Keep up the good fight everyone. Good night.

Janet Lee

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Girl52's picture
Replies 5
Last reply 10/21/2014 - 11:33am
Replies by: Janner, Linny, Girl52

Got message from sis tonight: surgeon says BIL's lymph nodes clear (nothing said about WLE tissue yet). Yay! What does it mean to have pathology of metastatic melanoma with clean nodes? What would staging be here? And if primary remains unknown, could this mean there's still something in there somewhere that could pop up? Does anyone know where further testing/treatment/watch-wait goes from here in a case like this? Does this depend on results of WLE (e.g., satellite lesions, in-transit, etc.)?  Thank you for any insight.

Sis-in-law of person just diagnosed with metastatic non-cutaneous melanoma

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ashlee12's picture
Replies 7
Last reply 10/22/2014 - 6:46pm

 

I'm very depressed I'm only 22. I'm getting married next year and my life is over. I have cancer and I feel as if I'm dying. I was checking for other moles tonight and I feel as tho I have about 4 others that look the same... All I do is cry I feel like this is it.  
Derm told me not on scale yet for melanoma

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Anonymous's picture
Anonymous
Replies 0

I am going to chat in a few minutes if anyone cares to join me..  Hope to see some of you there..

Love and Light

Carole K

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Anonymous's picture
Anonymous
Replies 4
Last reply 10/22/2014 - 2:18am
Replies by: JustMeInCA, Anonymous

Hey there.

I'm a 24 year old male with blonde hair, blue eyes and fair skin. About 6 weeks or so ago, I noticed a small mole type thing on my crown/vertex of my scalp, that I'm pretty sure wasn't there before. I went to my GP who said it didn't look like anything dodgy, although it looked like there were two colours in it (it looked brown to me, though I was using mirrors and a camera to see it) so referred me to a dermatologist. The mole was smaller than a pencil eraser, you know, the ones that sit on the end of pencils. So less than about 5mm - though a form from the hospital today says something about 2mm, but I'm not sure if that's referring to the mole. So it may be smaller. My GP said the referral would be about 6 weeks.

I wasn't happy about the length of time so I later spoke to my GP, who then made it an urgent appointment.

A couple of days after my appointment, checking the mole again, it had turned black, almost like a scab.

Two weeks later I went to see a dermatologist who looked at it, said it looked like a blood blister, though she said blood blisters don't normally appear on the scalp, so then referred me to plastics to have it removed.

A few days later the mole which had gone to look like a scab, well, fell off. Underneath it was a paler version of the previous brown mole.

Couple of weeks later I go to plastics consultant who looks at the mole on my scalp, says he'd be very surprised if it was anything, check's my lymph nodes in my neck/below my jaw and says they seem fine, says he'll refer me to another hospital to have the mole removed, then sends me on my way.

I keep monitoring it and the size stays the same, still flat against my scalp.
I go today to get it removed, went smoothly, I think. I asked the surgeon whether it looked like anything and she said although there looked like there were two colours in the mole/lesion, its uniform. She cuts it out, tells me I'll receive a follow up letter in the post in the next 4-6 weeks. If the biopsy did show anything they'd call me up sooner.

So, now I'm home, I'm worrying. I keep reading stuff online how people get the results back, which are 'fine', then down the line something serious shows up. How common is that? Does it sound hopeful what the doctors etc. have said? And is that a normal wait time for the results, if it was anything serious?

Thanks.

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